Abstract
Transition from pediatric to adult care is a well-recognized challenge for adolescents and young adults (AYA) with sickle cell disease (SCD) and thalassemia. Transition of care for AYAs is a multi-layered process, involving the patient, their family, and healthcare providers, with an end goal of ensuring that transition is as smooth as possible for all parties involved. In 2013, McMaster University launched a comprehensive care clinic for patients with SCD and thalassemia where a pediatric hematologist and an adult hematologist work side-by-side, along with a shared team of allied health care providers. One goal of this clinic is to facilitate fluid transition, by maintaining continuity in the patient’s medical care and providing a familiar environment for AYA patients. The aim of this study was to assess baseline level of understanding about transition from pediatric patients and their parents, expectations for transition, and recommendations for a smooth transition. In addition, opinions and experiences from young adult patients who had experienced transition of care under a variety of models were collected in order to identify key elements of how to optimally facilitate transition of care.
After an informed consent process, 17 participants were interviewed regarding their, or their child’s, transition of care. Interviews were conducted with 5 pediatric patients, 5 parents, and 7 young adults. One-on-one semi-structured interviews were conducted with questions ranging from types of medical visits, knowledge of transition, experiences with transition, and recommendations. Saturation was reached and data was analyzed using an inductive-iterative approach.
Eight SCD patients and 4 thalassemia major patients participated in the study. Themes that emerged included: apprehension from pediatric patients about leaving a supportive care environment; desire for a patient orientation with both their pediatric and adult specialists prior to transition; desire for a peer support group from pediatric patients, young adult patients and families; and need for a well established transition education piece for patients and families. Young adult patient experiences were diverse, as most had experienced SCD or thalassemia care at different hospitals. Patients who had transitioned in the McMaster clinic were pleased with the opportunity to participate in clinic visits attended jointly by their pediatric and adult hematologists prior to transition of care. Patients were appreciative of the continuous involvement of other clinic staff.
The baseline responses obtained from this study can guide policies in a combined pediatric-adult model Hemoglobinopathy Clinic. Completing transition of care “under one roof” has potential to provide a uniquely supportive environment for AYA patients. An overlap in clinic staff for pediatric and adult patients can facilitate a strong patient rapport with a consistent set of healthcare providers, and can help to ensure consistency of care and collaboration between providers as patients transition through the AYA stages of life. Steps can be put in place to ensure that transition is as undisruptive as possible and to eliminate patients feeling uncertain about their care process.
Disclosures
No relevant conflicts of interest to declare.
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